Another Strange Symptom

[Macho319]

Here are two other strange symptoms that I have which no doc understands. The first one makes me think I have the obstructive heart failure preserved ejection fraction phenotype caused by my NAFLD. This has to do with my Preload Failure more than anything  

1. My arms burn when raised. My arms burn when I hang up clothes. My arms burn when I wash my hair. My legs are weak. My thighs burn when walking like I’m exercising with weights on a machine. WHY?! I don’t believe these are dysautonomia symptoms. 

2. Bending over repeatedly makes me almost faint. For example bending over to get clothes out of my hamper and putting them in the wash. That repeated bending literally causes me to almost faint.

What do you all think? Sigh….

 

ARTICLE: https://www.ahajournals.org/doi/10.1161/CIRCHEARTFAILURE.120.007308

Read this section: Heart—Liver Preload Reserve Impairment via the Portal and Hepatic Veins

[Pistol]

@Macho319 My arms get HEAVY when I raise them above my head, and I also feel faint when I get back up from bending over. In my case this is directly related to dysautonomia. 

[Sea otter]

@Macho319 for me same thing as @Pistol wrote.

[MikeO]

i have had or still get some of what you are describing but never equated as heart failure as much as vascular issues and now diabetes which makes sense for me. I can tell you when i have had some pumping issues with my heart being short of breath was on top of the list.

getting more exercise has helped me quite a bit.

[Sarah Tee]

@Macho319, Sorry if I missed this, but have you seen an autonomic specialist yet? They should be able to tell you whether these are likely to be dysautonomia or not. Or was it an autonomic specialist that said they didn’t know?

Exercise intolerance is a common symptom in dysautonomia, and feeling that your arm and leg muscles are burning when doing activities that you wouldn’t normally struggle with could be exercise intolerance.

[MaineDoug]

I share these symptoms as well as many other cardiovascular issues. Four Cardiologists, 1 Pulmonologist, and 3 neuros whiffed on the diagnosis! 
Took my Columbia neurologist 1 minute to diagnose Dysautonomia/POTS. I have issues with BP, Tachycardia and Ejection fraction as well, which I attribute to low fluid volume.

My experiences taught me that the local docs (rural Maine) just aren’t good enough! I’ve moved all my specialists to Columbia and the Hospital for Special Surgery in NYC. What a difference! They actually know what their talking about! Beware docs without knowledge or experience!

[Macho319]

@Sarah Tee No I have not seen an autonomic specialist yet. I've only seen an EP at UCLA who specializes in POTS. He thinks I may have a delayed manifestation of POTS because I do not have the classic sustained tachycardia once tilted upright. 

@MaineDoug I agree. I started with the VA and they said I was deconditioned based on the results from the Cardiopulmonary Stress Test they did. I said BS! I took that same test to UCLA, explained my symptoms, they said either POTS or Preload Failure and Preload Failure it is. I even tried using my private insurance to see docs at Optum but they were worthless. So yes quality matters for sure in our cases! 

THANK YOU ALL FOR TAKING THE TIME TO RESPOND TO MY POSTS. #grateful

[MikeO]

@Macho319be careful of the usual it's dysautonomia and you just have to live with it. being deconditioned has its pitfalls that's why i suggested exercise it is affective. preload failure is testable IMO. POTS is very distinct symptoms. can't even equiate how this relates to a burning sensation..

Best of luck

[Sarah Tee]

@Macho319, is the burning like lactic acid build up, so what a healthy person might feel if they tried to hold their arms up continuously for ten minutes, but coming on much quicker? Or is it another burning feeling?

Sorry if I misinterpreted it. I was thinking lactic acid build up but happening quite quickly, as you mentioned it felt like doing heavy exercise with weights in your legs.

Exercise intolerance can come from dysautonomia, but it can also come from other causes. In other words, dysautonomia could explain exercise intolerance, but so could other diagnoses.

(I have exercise intolerance with my dysautonomia diagnosis. I also get tired very quickly when doing anything strenuous. I tend to just stop doing whatever it is, but if I continued, I would get that burning muscles feeling.)

[Macho319]

@Sarah Tee yes I believe it is lactic acid building up quickly. My iCPET showed a rapid increase in lactic acid from baseline to peak exercise. They did not offer an explanation as to why or what could be causing it. The other thing my test showed on was hyperammonemia when I reached peak exercise. They offered no explanation their either. 
 

My legs feel weak and numb pretty much daily once I start walking. Then comes the burning. The leg weakness and burning can also get worse after a big meal which could indicate blood pooling in my abdomen and not making it to my legs. The only thing that helps are good compression socks. I used to drink alcohol a lot for years so I also wonder if it’s neuropathy. My EMG was negative but I’ve never been tested for SFN. The saga continues. Sigh…. 

[MomtoGiuliana]

When I am in a bad flare I get burning in my muscles from very little exertion. Yes I can even get it after eating and I have not physically exerted.  Exercise intolerance is common in dysautonomia.  Compression does help me somewhat with this.

[MikeO]

5 hours ago, Macho319 said:

neuropathy

This is plausible as well. since i have been taking B12 and D3 it has helped. Have you been tested for PVD?

[Macho319]

@MikeOYes sir I've been tested. I've had a ankle-brachial index test and one other. Both showed no blockages or issues. I've also had an abdominal and chest CT Scan with contrast and both showed no issues either. I have every doc in Los Angeles County stumped!

@MomtoGiuliana Ive been experiencing this daily for over three years. This is what makes me think it's not a flare and something else. I just want an answer for my preload failure diagnosis. I have the what, I just need the why! 

[MomtoGiuliana]

It's hard to know without further evaluation by a specialist.  When I was first diagnosed with POTS I had been having that symptom for probably about a year (and was overall quite disabled by the time I was finally diagnosed).  The pattern of symptoms is different for each individual with dysautonomia--and symptoms and intensity of symptoms can change over time for patients.  Some people can be sick continuously for years, while others have a pattern of flare ups with good health in between, etc.